Archive for the ‘Hopeful Parents’ Category

It looks strange as I type it. I haven’t worked in six and a half years, and time has made a that three-letter word look incredibly daunting. I don’t have work clothes. I’ve forgotten more office skills than I ever developed. I was stay-at-home before I even became a mother.

As a stay-at-home-mother of special needs children with several years experience, I find it hard to imagine another identity. If I’m uncomfortable with the shift, my children are vocally despairing. But feelings of inadequacy and fear of change prove to be no match in the face of a bank account straining after years of therapies on a single income. To work I go!

Of course, I haven’t exactly been idle these last few years, and in terms of self-development and transferable skills, with a hopeful outlook my CV looks positively marketable.

How can I be discouraged by an interview panel, when I’ve faced the eligibility board for special education services not once, but twice?

Will I ever have to face a meeting in the world of work with anything like the pressure of an IEP meeting? Setting goals and meeting deadlines? I’m well practiced.

You need someone with excellent communication skills? Look no further than the caregiver of someone with special needs, particularly when language difficulties are an inherent feature of the condition.

If a presentation doesn’t go over well in words, I’ll just skip on to pictures. Imagine social stories merging with powerpoint- I’ll find a way to get my point across with any audience.

I can work under pressure, think outside the box…be flexible, organized…a team player. If there was something to learn over the last few years, I’ve mastered it. We all have. Even if every day still feels like we have so much to learn.

This position is actually going to be about playing a strong advocacy role and strengthening community. Reading the job description, it felt like it had been written for me.

But there is one more thing that makes this job perfect for me. I’m the sole applicant. A job that nobody else wants? I’m your woman. You’re just going to have to pay me in more than hugs and kisses this time.

This post was published today here at Hopeful Parents, but the site is taking so long to load that I’m posting it here as well.

I spend a lot of time teaching Pudding skills that I hope will prove useful to her in the future. Sometimes I teach her things that are also useful to me right now. Earlier this year she learned how to make her own bed. It is great that my girl at 5 is managing something my mother couldn’t get me to do at 15, and most days I take more than a little pride in her achievements.

There is a downside, of course, waiting to bite. Some days we’re running late, but Pudding insists on making her bed before leaving the house. As I wait with the utmost impatience, I’m reminded of the old adage, be careful what you wish for.

Now the solution would be to organize ourselves better so that the bed-making was taken care of long before we need to set off. But being organized isn’t my strong suit. I blame my mother- she didn’t even teach me to make my own bed until my late teens, my lack of organizational skills is entirely her fault! Just kidding (Mum!) and in truth, who cares about being a few minutes late for school when such essential learning is taking place right at home. Not just domestic chores, but time-management and planning.

Then there are other things that I haven’t taught Pudding. Some things I’m not sure how to teach, or I’m not sure if they should be taught. I walk a line between deciding if something is a necessary skill, or if it would be trying to force neurotypical ways on an autistic brain. I read accounts by Autistic adults, but my ultimate gauge is my relationship with Pudding. Iimagine having conversations with her in a decade or two, in which I justify my actions.

I have no qualms about teaching her to make a bed. She’ll thank me one day (thank you, Mum). But what if my efforts were to go too far? What if she felt forced into acting in a way that isn’t her, and doesn’t make sense to her? Some things aren’t black and white skills, but a whole murky grey area. A sense of what is appropriate may differ vastly from person to person.

For a long time, if I was sick, in pain, or crying with sadness, Pudding did not seem to show empathy. I’m not saying she didn’t feel empathy, just that she wasn’t expressing it in the way I expected. But expressing empathy in my (neurotypical) way, was not something I felt I should teach.

Perhaps as she got older, I’d tell that people expect others to behave in certain ways, but only at the point I felt I could do that without Pudding feeling judged or wrong for expressing herself differently. I can tell from the awkwardness of that sentence that I’d struggle with that no matter how I tried.

Fortunately, for me, Pudding has lately begun to express empathy in a very typical way. Last week when I mentioned I had a headache, Pudding got out of her chair, crawled into my lap, kissed my forehead twice and told me she was making it better.

Would you believe me if I told you it worked? And it took less time than the tablets I’d already taken too!

I didn’t have to wait too long for this latest development to strike back. That same evening as I tried to get her to go to sleep, Pudding tossed and turned and eventually got out of bed. When I asked what was wrong, she let me know that her doll was too hot, and therefore she had to take off her pyjamas and replace them with a nightgown, which took her some time to find.

I felt my headache creeping back the more empathy she expressed regarding Kelly doll, empathy looking a lot like a tactic to delay going to bed.

Of course, sleeping by herself is another skill we haven’t yet figured out. If that one were to bite back too, I wouldn’t notice…I’d be too busy catching up on all those sleepless nights in a galaxy far, far away.

It started out as a romance. A pretty cliched love story, actually: boy meets girl, boy sweeps girl off her feet and whisks her off to distant lands. Before they knew it, a baby girl came along and the script had morphed into a screwball comedy. This was hackneyed fish-out-of-water stuff. Adding a baby boy moved the family straight into a farce.

Then there was a twist: a diagnosis- this was special needs parenthood. A showstopper. It couldn’t be a comedy any more, could it? Surely the next scenes had to be gritty. A kitchen sink drama. Moody stuff, filmed only in black and white.

Maybe, for a little while. But what if that was just one scene? What if the story continues in glorious technicolor, with joy and laughter, and plot developments we never saw coming? Perhaps as the camera keeps rolling it can return to comedy, or romance, or even an action adventure.

Last week, we drove an hour away from our home in Johannesburg to a wildlife reserve. We fed a family of elephants. The kids reserved at first, then curious, then brave, then gleeful. Picture a baby elephant raising its trunk, and Pudding reaching out her own arm in wonder, then tentatively stroking. It was a sensory experience like no other. After a few moments of silent greeting, Pudding raced off to place carrots between the “lips”.

My girl who struggles with social interactions with her own species was instinctively communicating with another. Then the elephant- scene-stealer that she was- sneezed on Spectrummy Daddy. You didn’t need canned laughter for that piece of improv!

There are some things you can’t capture on film, but these are the very scenes you will never forget. The diagnosis wasn’t the end of our story; it wasn’t even the beginning. There’ll be more tear-jerking moments, suspense, and side-splittingly funny times. Forget what they say about never working with animals or children: the show must go on!

This post was originally published at Hopeful Parents. You can read it there by clicking below:

I’ve been volunteering for Autism South Africa since I visited their offices a few months ago. Unfortunately, the financial difficulties the organization was experiencing then have become even more pronounced. There is no government support. Donations are dwindling. Existing sources of revenue are drying up.

There is the great dilemma- should you continue to push for awareness in a country where autism is under-diagnosed and misunderstood, knowing that it is already impossible to provide adequate assistance?

The one thing they desperately need- more money- I’m unable to bring. I couldn’t help but feel helpless.

And yet that morning…

In walked a student from the local university looking for further information about autism spectrum disorders.

An educator is travelling around the country providing workshops for parents, therapists and teachers.

A therapist stopped by and asked to be added to the mailing list for more information about autism workshops.

The mother of a newly diagnosed child was able to walk in and collect information about autism in her own language, and given direction about the next steps.

Another concerned parent could call in and schedule an appointment for a full assessment free of charge.

The staff continue to work on ways to help everyone affected by autism in South Africa has access to the support and services they need, regardless of the current situation.

Following a phone call in which a father asked, “Is there any hope?” following the recent diagnosis of his child, the member of staff who took the call turned to me and said he wasn’t sure how to respond to that question. He asked me how I would have replied.

There is always hope.

When there is nothing left to give, hope is the one thing you can give. We hopeful parents know that. A cause is never hopeless as long as there are people trying to find it. I don’t feel helpless any more. I described my first visit to the office as a flood, but now I know better. It is a lighthouse. In these dark times, Autism South Africa is still shining a light. Now all that remains is to make that beacon brighter.

This post was originally published at Hopeful Parents. You can find it by clicking the link >here<

Christmas is strange for me. I never feel more homesick than at this time of year, nor do I feel more guilty. I have an overwhelming desire to give my kids the same kind of Christmas that I experienced as a child, and I just can’t.

I’m not just talking about the winter wonderland that was a feature of the season in northern England, such a far cry from the heat of a South African Christmas, but the experience of being around family and friends. Of having those ordinary moments that appear so extraordinary through a child’s eyes. The magic of Christmas.

Life as a special needs child is tough. When she role-plays, I’m at once elated that she is developing her pretend play skills, and dismayed that her doll is “going to therapy” day after day. Childhood should be about wonder and magic, not mundane, routine therapy.

So at this time of year, I find it even more important to put the wonder back into her life.

With no sensory Santa around these parts, I knew I’d have to work some real magic. Yesterday we hosted a Christmas party at our house, and a member of our community here very graciously made a special appearance.

It was perfect. Pudding was at ease in her own home with us around. She was so excited (and only a tiny bit afraid) to meet Santa, who seemed to know lots about our little girl. She was as comfortable as can be, content to sit in the chair next to him even after he’d delivered the goods.

It isn’t going to be a Christmas just like the ones I used to know, but that doesn’t mean it won’t be every bit as special.

Maybe the marvel of Christmas isn’t just for kids. Maybe we parents crave the smile on their delighted faces every bit as much as they desire a Hello Kitty or Thomas The Train toy. The good thing is that those are the presents that can be delivered throughout the year, though they never stop being magical. You just have to believe.

Some days, it is really hard to write. There are thoughts swirling around my head that I can’t seem to encourage down to my typing fingers. Is this what it is for Pudding? Having thoughts that you can’t express?

I think perhaps I have writer’s block. So much is happening, but I can’t write at all. It plays over and over in mind. I lack imagination.

After a year of blogging, the same themes crop up. I type a post, then delete it entirely. I’ve said it before; there is nothing new to put down. But there is comfort in the familiar. Those little captured moments that are nothing, but mean everything.

Today we went out for breakfast, and Pudding finished first. Unprompted she told the waitress she had finished and to “take away the plate please.” That has never happened before, yet it has happened all along.

Old bits of new. I’ve written it before. Singing the same tune. My version of echolalia.

I’m busy now, wearing a few different hats. Feeling like I can’t dedicate to anything all that I should because there are other pressing deadlines. I flit from one thing to another, never quite doing anything. My play is not purposeful. I’m hyperactive.

At social gatherings, my mind is elsewhere. I should be making small talk, but remain silent. It gets too fast-paced for me and I want to shut out the world. Aloof.Uncommunicative.

When I do snap out of my reverie. When I do enter into a conversation, how long before I manage to bring it around to my topic of interest? Not long. I’m perseverating.
I’ve spent all this time trying to understand her, completely missing the fact that she is just like me. I find so many similarities between Pudding and the little girl I used to be. Not so different after all.

She is here at my side as I type, so I hurry to finish. Just as I find myself in so many ways entering her world, she wants to enter mine. She is engaging me. So I’ll leave this post unfinished, because everything that I’ve ever written about is happening right now, and I don’t want to miss any of it.

I ask her what she wants to do. Sing!

So the two of us will leave our respective little worlds, and join together in our off-key harmony.

When she was two, before we realized Pudding had any problems communicating, she would recite entire books. She had her favorites, and would ask for them night after night. I have Corduroy, Where The Wild Things Are, Madeline, and a few others etched into my memory too. Sometimes I still recite them when she gets overwhelmed, the words are calming to both of us- a shelter from the outside world.

In those days, Pudding couldn’t answer a yes or no question. She was unable to make a choice- repeating the last offering, even if it was clearly not the thing she wanted. Back then, echolalia was mysterious and scary. It seemed like a real barrier to her language development. I was disheartened by scripting, and longed for those precious snippets of spontaneous conversation.

Since then, I’ve learned to embrace echolalia as the way Pudding learns language. It isn’t an easy way for her, but this is what she has. Working with her is the only way that feels right. Her language skills continue to improve; not in the giant leaps we’d prefer, but in its own way, like just about everything about her. We’ll take it, gladly.

Though we’ve added some new books here and there, Pudding still sometimes enjoys to read those old favourites from time to time. Because she knows them by heart, sometimes she’ll read them out loud to herself. Yesterday choseCorduroy. A clear favourite from her first birthday, when “De Cordugee” was her nightly request. Her very first special interest. She read, using the same intonations as me. The story is so soothingly familiar, I was lulled into a kind of trance.

I snapped out of it, when she suddenly turned to me and said,

“Mummy, Lisa wants to buy Corduroy from the store. She needs money.”

It occurred to me that in all this time we’ve read, and re-read, and recited that book, she didn’t understand it until now. I knew she was only reciting, but for some reason I never thought about explaining the story to her. I’m not even sure she would have wanted me to. When I would ask her questions about her stories, she would refuse to answer, and get mad that I’d deviated from the script. She always seemed content to look at the pictures, and listen to the collection of words that always stayed the same. No doubt a pleasant haven from the tortuous conversations with real people that most be bewildering and overwhelming to those with auditory processing difficulties.

Not so long ago, she would just keep asking and asking for something that we’d run out of, not understanding that I couldn’t make it appear at will. Now she is letting me know that “we have to get some from the store,” and while there, “we have to pay for it.” Echolalia? Perhaps. But she is learning and using these phrases appropriately. She is applying them to her old favourite stories that she can now appreciate on a whole new level. I see that she is understanding more and more about this complicated and mysterious world.

Books might always be her refuge, but now she can appreciate them in a different way. She can even deviate from the script once in a while. Maybe this is the start of a new chapter in Pudding’s story.